It Came From The Porch : All About Me : CML

So you're curious about this CML thing. Well, come on in (sigh). Sit down, let's talk.

I just went out and started looking around to get some reference material for this part of the site. I found so much shit, and it was so depressing, that I said fuck it, this is supposed to be a site from my point of view anyway, so I'm just gonna tell you what I know about it. Dr. Salzman, or Shannon, if you read this and I get anything wrong, please let me know. If any of you want more information, just go to your favorite search engine and enter CHRONIC MYELOGENOUS LEUKEMIA. It'll pull back tons of stuff to read. Have fun. (that would be sarcasm, folks, in case you're from Betelguese and don't recognize it unless you're concentrating.)

Chronic Myelogenous Leukemia is a chromosomal disorder. A chromosome referred to as the Philadelphia Chromosome hooks up where it really shouldn't, and because of that, my body does not know when to stop manufacturing white blood cells. This disease is not localized, it's not a cancer that kills by displacing or destroying healthy cells. It is throughout my entire body at a very basic level. My white blood cells themselves are normal (at this stage of the disease), but there are too damn many of them. They interfere with the efficient working of the rest of the blood (red blood cells, which carry oxygen, and platelets, which help in clotting.) They also gather in the spleen, swelling it to dangerous proportions, displacing the other organs in the abdomen.

That was how I was diagnosed. I started to have a lot of lower back pain. At first I assumed that because I sit in front of a computer all day, and don't work out at all, it was muscular problems. Then I noticed that it was worse right after I ate, and that scared the piss out of me. At that point I did something I hate to do, and went to see the doctor. He did a complete physical, took some blood and gave me some prescription-strength antacids, and I went back to work. Later, I got a call.

"Mr. Andrews? This is Connie, Dr. Dill's nurse. The doctor would like to speak with you, can you hold?"
Oh shit, I thought, this is not good. Doctors don't talk to patients like this unless...
"Mr. Andrews? This is Dr. Dill. We just got your bloodwork back, and it came back abnormal."
"Abnormal how?" I asked.
"Your white blood count is rather higher than normal. On the order of 250,000."
"And it should be...?"
"Around five to ten thousand."
Oh fuck. I've read entirely too much about medicine, and I knew that a white blood count like that could mean leukemia. It was funny, I didn't get really freaked out or anything, didn't do the 'this can't be real' thing. It just somehow seemed real, seemed true. I automatically accepted it, even before I had confirmation that I did, in fact, have the disease.
The doctor muttered something quickly about it possibly being CML. I guess he didn't want to be the one to tell me for certain.
"I'd like you to go over to Providence Hospital and see a blood specialist. Can you do that this afternoon?"
"Sure," I said.
"My nurse has already made you an appointment."

About an hour later I was listening to Dr. Michael Meshad describe the disease that I had, and what it would mean to my life. I didn't break up and cry in front of him. I felt calm and washed out, empty. Slightly sweaty, with the sweat cooling off me. He wrote me a prescription for hydroxyurea and a blood thinner to help my body flush all the white blood cells. I took the prescription and walked out the door, headed home. About this time, it started to hit me a little. My eyes got tingly and I cried a little. The part that I dreaded the most was telling my sister. I honestly didn't know how I was going to do that. Whenever I thought of it, my chest would tighten and I would begin to cry again. However, as I was sitting at the light, waiting to turn into my parent's neighborhood, it occured to me that I had only learned what would probably be the cause of my death. I still had no idea when it would happen. In that aspect I was one up on everybody else. We all die, and none of us knows when it will come, or how it will be delivered.

When I pulled into the driveway, my father was watering his plants. I got out of the car and he walked over. I looked at him.

"Remember all those jokes about me looking like a cancer patient? Turns out it's not so funny after all."

He hugged me to him and held me for a moment. He took it quite well, I thought. We went and got my prescription filled. Mom wasn't going to be home until around 8, so I told him I'd be back and I went to 2005 to tell Rob and Sid. Rob wasn't home. I told Sid. I don't think she really understood what it meant at all. She's known a lot of people with various forms of cancer, and lived with that. I think she assumed it was the same kind of thing. It's not. Anyway, I went back out to the house and told my mother. Oh boy, that was fun. She immediately went into an analytical mode, asking about the details of the disease, which I thought was good.

You know, for a whole year before I was diagnosed, I had been getting skinnier and skinnier. I was tired all the time, depressed, unhealthy, but it never occured to me that something like cancer could be the cause. I had kind of assumed that the lack of energy came from smoking too much pot... after all, I was living with PJ. :) Christy had noticed that I frequently had night sweats, and so had I, but it just never clicked. After I was diagnosed, many things fell into place. In all honesty, a weight was lifted from my shoulders. I now had an explanation for all those vaguely distressing things that had been present in my life. Just knowing what it was made a huge difference.

My current treatment of the disease is basically taking drugs (hydroxyurea, three godawful pink and green pills a day) to keep the level of white cells in my blood down, and frequent visits to the doctor to monitor my status. I'm glad I got comfortable with needles, getting tattooed and pierced, 'cause the folks at the hospital just love to stick me and suck my blood out. I'm also taking an anti-depressant, a seratonin re-uptake inhibitor called Paxil, every day. I wish I'd had this stuff when I was a fucked-up fifteen year old! It doesn't get me 'high', it just doesn't let me slip down into depression for no reason, and that is an absolute godsend. It's a good thing, 'cause they don't let you go through with the bone marrow transplant if you're depressed. Which leads us to that cheerful subject.